This is another update on the little boy Rex that I asked you to pray for last week.
I copied this directly from the caring pages web site that Rex's mom and dad have started for Rex-please continue to pray for this precious family and for 8 year old Rex-their lives will forever be changed.
I had hoped to be able to write tonight that Rex's tumor (removed last Thursday here at Cook Children's Hospital in Fort Worth) was benign. That was the original opinion of the doctors here, and that was what we held on to for these last 18 days.
But this afternoon our world came absolutely crashing down around us when Jill and I were told that our son, Rex, has a Grade III malignant glioma that will have to be treated with both radiation therapy and chemotherapy.
We obviously haven't told him what's going on because Jill and I and our family are still trying to wrap our heads around the fact that our 8-year-old boy has brain cancer. I don't even believe I just wrote that last sentence.
Here's how we went from benign tumor to malignant:
Thursday afternoon, Jill and I drove home to Abilene to pick up Ashley from school, get Rex a few things he needed for physical therapy treatments and to see Ashley in the Abilene Christian Schools Christmas program.
On our way home, we got a call from Dr. Jeffrey Murray, the head of neuro oncology at Cook Children's, calling to tell us that the tissue from Rex's tumor has been sent to Dr. Peter Berger at Johns Hopkins Hospital in Baltimore for further study.
The pathologists at Cook Children's were having a hard time pinpointing the type of tumor they're looking at, so they sent it off to Dr. Berger, who is apparently the country's final word on determining the grade and type of tumor.
Turns out Dr. Berger's research was able to determine that Rex had a larger Grade I or II malignant tumor with a Grade III malignant tumor growing inside the other tumor. It's a very rare occurrence, which is why diagnosis was a problem.
The Grade III portion of the tumor is only about 15 percent of the tumor, but it is aggressive. I don't want to get into numbers, but the five-year survival rate for a Grade III tumor of this type isn't too great.
Fortunately, there are treatment options. The first treatment would be to surgically remove as much of the tumor as possible, which has been done. Second is radiation therapy, followed by chemotherapy.
Rex's medical profile has already been sent to Texas Children's Medical Center in Houston where they will analyze it to see if Rex qualifies for a clinical trial. If he does, we will begin proton radiation therapy in Houston sometime shortly after the New Year.
That six-week stay in Houston would be followed by oral chemotherapy (one pill, three times a day), as well as IV chemotherapy, which would be administered once a day every other week here in Fort Worth.
However, all of this is still conjecture until we talk to more doctors on Monday. I'm sure by the time we reach Houston we'll all be sick of doctors and their over-my-head terminology.
So here we are.
We always knew the possibility existed that Rex's tumor could be malignant and that we would have to face this journey. But we just believed it would be benign.
However, even as we prayed that God would make the tumor in Rex's brain benign, we prayed just as fervently that if it wasn't that we would be prepared for the battled that would lie in front of us.
Well, the battle has begun, and though we are tired, Jill and I are ready.
We talked after dinner earlier this evening and agreed that now was the time for us to either live up to our faith and everything we have believed since we were little, or cut and run and try to do this on our own.
We know that we can't do that.
We know that we'll need God, our family and our friends and many others in the coming days, weeks, months and years if Rex is to beat this.
My heart aches that an 8-year-old boy has to endure what's in front of him, but Rex is strong and I know that when we tell him what the plan is for treatment that he'll put his trust in God and be ready for the fight as well.
God has given us great faith, family and friends. We'll need all of them in the days to come.
PLEASE CONTINUE TO PRAY FOR THIS FAMILY-THIS IS A HUGE MOUNTAIN THAT THEY MUST NOW TRAVEL AND FOR THIS SWEET, LITTLE 8 YEAR OLD BOY-I THINK IF IT WERE ME I WOULD BE STRUGGLING TO UNDERSTAND A GREATER PLAN IN ALL OF THIS-I WOULD HOPE AND PRAY THAT I WOULD TRUST THAT MY GOD WAS IN CONTROL AND THAT HIS GREATER GOOD WOULD AND WILL COME OUT OF ANY SITUATION-I PRAY THAT I WOULD-BUT IF I AM HONEST HERE I MUST ADMITT I READ THIS AND WEPT FOR THIS FAMILY AND WONDERED WHY?
I KNOW MY GOD HAS EXPERIENCED BOTH THE JOYFUL TIMES AS WELL AS THE HORRIBLE, AWEFUL TIMES, HE KNOWS OUR JOYS AND OUR SORROWS-THAT HE LOVES REX, THAT HE IS HIS SON-AND THIS IS NO SURPRISE TO HIM-BUT IT IS TO THIS SWEET FAMILY AND TO ALL OF US THAT HAVE BEEN LIFTING HIM UP IN PRAYER-OUR HEARTS ARE TRULY SAD TODAY-AND I MUST ADMITT MINE IS WONDERING WHY?
As I was typing this the song "It Is Well, With My Soul" started going through my head. Pray it is well with their souls.
THANK YOU FOR LIFTING UP THIS FAMILY OF BELIEVERS BEFORE THE THRONE OF GOD.